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Neg. Blood Test... Endoscopy Next?

taynichaf

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taynichaf Contributor
taynichaf
Posted

2nd blood test = negative!!... And once again, the doctor only did one test. She gave me an option of the next step of the biopsy.... but should I even bother?? Or should I just end my testing here and concider myself non celiac gluten intolerant?

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Deaminated Marcus Apprentice
Deaminated Marcus
Posted

HA !  :o   We're in the same boat but I was there first.

 

Can you tell us which test?

 

It's so frustrating to see the doctor didn't do the panel.  :angry:

When I was researching on Celiac.com, I read of people who had only one positive on the panel.

When the doctor only does one test you have less chances + you were gluten free.

 

I don't think you should assume you have gluten intolerance.

Back in 2010 my PCP (not the one I have now) assumed the same thing

without testing me at all and all my problems returned in 2011.

I kept thinking it was hidden gluten but then I was just eating produce.

By then it was too late to do the testing.

 

Now I don't know what I have.

Though the food intolerance blood test showed I have a wheat intolerance + many others.

 

Check out this information:

 

Open Original Shared Link

 

and 

 

Open Original Shared Link

 

 

It's better to be patient and find out what you have then to be guessing forever.  -_-

 

Marcus

taynichaf Contributor
taynichaf
Posted
  • Author

HA !  :o   We're in the same boat but I was there first.

 

Can you tell us which test?

 

It's so frustrating to see the doctor didn't do the panel.  :angry:

When I was researching on Celiac.com, I read of people who had only one positive on the panel.

When the doctor only does one test you have less chances + you were gluten free.

 

I don't think you should assume you have gluten intolerance.

Back in 2010 my PCP (not the one I have now) assumed the same thing

without testing me at all and all my problems returned in 2011.

I kept thinking it was hidden gluten but then I was just eating produce.

By then it was too late to do the testing.

 

Now I don't know what I have.

Though the food intolerance blood test showed I have a wheat intolerance + many others.

 

Check out this information:

 

Open Original Shared Link

 

and 

 

Open Original Shared Link

 

 

It's better to be patient and find out what you have then to be guessing forever.  -_-

 

Marcus

It was the TTG IGA AB test.... I think it's better to be patient then to be guessing forever too:/ But now I just have my doubts.

 

How do you get tested for food intolerances??

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

 Well it's too early to have doubts.

Maybe your gluten challenge was too short.

 

Did she check your total IgA?    You need that test to be done also.

 

And as you know from reading here, you have to include the tests DGP-IgG and DGP-IgA.

Lots of people on this site tested negative for tTG but positive for a DGP test.

 

Find out from the lab the code for a proper panel and in a month or 2 go see the doctor with the Celiac panel code 

that way she can't just give you a single test.

 

I think you should get checked by an allergist for food allergies and environmental allergies

to check what is causing your breathing difficulties.

 

About the food intolerance panel:

I was keeping a food diary for over a year and figured out some of the foods that were causing

me aches and pains like kidney beans, etc but some were too tricky to figure out so I did my online

research into the Food Intolerance test

and I ate foods on the list over the month to stimulate my immune system and then I did the blood test which covers over 200 foods 

and the results came back in the form of a coloured chart: red for highly intolerant and yellow being medium and green being ok.

Many matched what I had figured with my food diary and self testing but I also found others I hadn't suspected like eggs and peas.

It's an expensive test and some say it's not scientifically proven to be accurate but I'm happy I took it. 

I have no regrets.

Look at your local labs web site to see if they offer it or phone them. 

 

......................................................................................................................................................

From the symptoms you describe in your other post you should read about Crohns disease.

It also causes mouth sore.

 

Open Original Shared Link

nvsmom Community Regular
nvsmom
Posted

I'm not normally a huge fan of the endoscopy for people (who have high blood tests), but I think in your case you should consider doing it. I know getting a diagnosis has weighed heavily on you lately, and if you get the biopsy, you will know either way. If it is negative, then you have NCGI. If it is positive, you can assume that you are one of the few who has negative serological tests in spite having celiac disease.

 

You could request, by name, the other blood tests for celiac disease. Bring them written on a piece of paper and give it to the doctor, and make sure you know if she has complied or not. I know it can be flustering to talk with doctors so having it written down may help.

 

Good luck with whatever path you decide to follow.  :)

Scarletgrrrl Rookie
Scarletgrrrl
Posted

I'm not normally a huge fan of the endoscopy for people (who have high blood tests), but I think in your case you should consider doing it. I know getting a diagnosis has weighed heavily on you lately, and if you get the biopsy, you will know either way. If it is negative, then you have NCGI. If it is positive, you can assume that you are one of the few who has negative serological tests in spite having celiac disease.

 

You could request, by name, the other blood tests for celiac disease. Bring them written on a piece of paper and give it to the doctor, and make sure you know if she has complied or not. I know it can be flustering to talk with doctors so having it written down may help.

 

Good luck with whatever path you decide to follow.   :)

I am in the same boat. I had the blood test done just over a month ago which came back negative. I hadn't had any gluten for 6 days before the test so i don't know whether that had anything to do with it. I am not even sure which test she ordered. I will have to ask her for a copy next time I see her. I got a referal to a specialist who is going to do an endoscopy in July. I am going to have to reintroduce gluten which I am a little scared to do. I have had all these symptoms disappear since I stopped eating it: tinnitus, tingling in my toes, back and jaw pain, arthritis in my wrist. Pretty scary stuff. I really want to know for sure whether I am celiac which is what I suspect or NCGI.

notme Experienced
notme
Posted

my blood test was negative, too.  my GI already knew that i had been eating gluten-free but she had me tested anyway - BUT - she also tested me for many other things, to rule them out.  (like crohn's, thyroid, etc)  i got my dx when i had the endoscopy.  in fact, she could actually see the damage.  after i got rid of the wheat, and i mean for quite a while, other things (that maybe i thought were caused by other allergies) cleared up as well.  good luck :)

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Deaminated Marcus Apprentice
Deaminated Marcus
Posted

notme!     WOW, what an inspiring post.  A GI doctor who is thorough and who investigates!  :)

 

My blood tested negative and my GI doctor says I don't fit the profile  (ie: under nourished-skinny-puking)

 

I agree notme!,  a good doctor investigates for other conditions too as Celiac can mimic other conditions

or other conditions can also co exist with with Celiacs.

taynichaf Contributor
taynichaf
Posted
  • Author

I'm not normally a huge fan of the endoscopy for people (who have high blood tests), but I think in your case you should consider doing it. I know getting a diagnosis has weighed heavily on you lately, and if you get the biopsy, you will know either way. If it is negative, then you have NCGI. If it is positive, you can assume that you are one of the few who has negative serological tests in spite having celiac disease.

 

You could request, by name, the other blood tests for celiac disease. Bring them written on a piece of paper and give it to the doctor, and make sure you know if she has complied or not. I know it can be flustering to talk with doctors so having it written down may help.

 

Good luck with whatever path you decide to follow.   :)

Before I was so sure that I just needed a biopsy and then this would all be over with... But I think this gluten challenge is making me so anxious and overwhelmed.. ughh. And both times I went to the doctor I wrote down all the celiac tests and gave it too them and I even underlined and bolded the world FULL celiac panel..

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Was it a handwritten note or did you print it . :unsure:

Were the fonts big enough?

Did the doctor have her glasses on? B)

 

:)

 

 

You do all the work and she still messes it up.

That is so frustrating !  :wacko:  

notme Experienced
notme
Posted

notme!     WOW, what an inspiring post.  A GI doctor who is thorough and who investigates!  :)

 

My blood tested negative and my GI doctor says I don't fit the profile  (ie: under nourished-skinny-puking)

 

I agree notme!,  a good doctor investigates for other conditions too as Celiac can mimic other conditions

or other conditions can also co exist with with Celiacs.

the profile lolz - you're not a serial killer!  (cereal killer?  killed by cereal?  lolz..)

 

more like caused by celiac than a co-existence.  many things i did not realize (because they had come on so gradually and over a long period of time) that i was suffering from... ie:  i had a 'dull' headache all the time.  i only noticed the extremely painful migraines <which went away almost immediately after changing my diet) i woke up one morning and my head didn't hurt.  at all.  i didn't notice it (because i was used to it) until it went away.  this thing will hit *all* your systems if it is left untreated.  

 

i did get a good doctor - i know many are not as savvy -  i was also as skeptical as anybody on here who is having doubts about their diagnosis.  feeling so bad you are sure you have cancer, etc, brain tumor i guess she was trying to convince me, too, that it wasn't anything else.  and probably a little 'c.y.a.' on her part just to make sure :)

taynichaf Contributor
taynichaf
Posted
  • Author

Was it a handwritten note or did you print it . :unsure:

Were the fonts big enough?

Did the doctor have her glasses on? B)

 

:)

 

 

You do all the work and she still messes it up.

That is so frustrating !  :wacko:  

It was hand written, but it was readable! The first doctor said they didnt have all the tests I asked for... And the second doctor I dont think even checked. And I pointed it out to BOTH of them! Very frustrating... And the thing is I have been going to doctors for a few years now and have had a lot of testing, so everything else is pretty much ruled out.. Just gata be patient:/

taynichaf Contributor
taynichaf
Posted
  • Author

my blood test was negative, too.  my GI already knew that i had been eating gluten-free but she had me tested anyway - BUT - she also tested me for many other things, to rule them out.  (like crohn's, thyroid, etc)  i got my dx when i had the endoscopy.  in fact, she could actually see the damage.  after i got rid of the wheat, and i mean for quite a while, other things (that maybe i thought were caused by other allergies) cleared up as well.  good luck :)

Okay, this gives me hope! Thats great that your feeling better! I'm going to message you with a few questions..

taynichaf Contributor
taynichaf
Posted
  • Author

I'm not normally a huge fan of the endoscopy for people (who have high blood tests), but I think in your case you should consider doing it. I know getting a diagnosis has weighed heavily on you lately, and if you get the biopsy, you will know either way. If it is negative, then you have NCGI. If it is positive, you can assume that you are one of the few who has negative serological tests in spite having celiac disease.

 

You could request, by name, the other blood tests for celiac disease. Bring them written on a piece of paper and give it to the doctor, and make sure you know if she has complied or not. I know it can be flustering to talk with doctors so having it written down may help.

 

Good luck with whatever path you decide to follow.   :)

I think I need to have the endoscopy so i can no for sure... I'm just getting soo frustrated with all of this! But ohh welll... I really tried getting my doc to order those tests! But I don't want them to think, that I think, I know more about all this stuff then them...if that makes sense? ha

 

If I don't go thru with the biopsy, then I will DEMAND those tests! But I think I'm just fed up with the blood tests atm...

 

Thank you :)

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Keep eating a few slices of bread till the next blood tests.

Maybe providence feels you don't have enough gluten yet?

Next time look at the blood test sheet when she hands it to you and give it back if it's not what you asked for.

Just tell her you read it in a Celiac book. (say Dr Green said so).

Don't feel bad about making the doctor feel bad about your blood test list.

You are the client and she's so busy she'll forget about you after you've left.

taynichaf Contributor
taynichaf
Posted
  • Author

Keep eating a few slices of bread till the next blood tests.

Maybe providence feels you don't have enough gluten yet?

Next time look at the blood test sheet when she hands it to you and give it back if it's not what you asked for.

Just tell her you read it in a Celiac book. (say Dr Green said so).

Don't feel bad about making the doctor feel bad about your blood test list.

You are the client and she's so busy she'll forget about you after you've left.

Ok! Thank you!

taynichaf Contributor
taynichaf
Posted
  • Author

I just got an endoscopy scheduled for about 3 weeks from now... Do you think thats going to be enough time eating a lot of gluten?? I've already been eating a lot of it for about 2 weeks...

 

Also, (I live in the U.S.) how am I supposed to pay for this?!?! I'm still under my parents insurance but my mom says they probably wont cover any of it.. I'm 18 and can't get a job, and I feel so bad for making my parents pay for all these medical bills :(

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

If it's any consolation I'm in Canada and I had to pay for the Celiac blood panel and the food intolerance blood test and even my vitamin D test.

 

I think it's best to not gorge on the gluten foods (donuts, cookies),

just eat 4 slices per day but give it more time as you only have one shot at this.

 

 

The Colonoscopy at the other end could help rule out Crohns and Ulcerative colitis. (or do it another time)

 

https://www.celiac.com/forums/topic/2687-ulcerative-colitis-vs-gluten-sensitivity/

 

You are young and need to find out what you have so that you can move forward and age heatlhyly.

 

I hope you can find a  financial compromise.

 

I got to go eat a sandwich for supper now (for my gluten challenge).

taynichaf Contributor
taynichaf
Posted
  • Author

If it's any consolation I'm in Canada and I had to pay for the Celiac blood panel and the food intolerance blood test and even my vitamin D test.

 

I think it's best to not gorge on the gluten foods (donuts, cookies),

just eat 4 slices per day but give it more time as you only have one shot at this.

 

 

The Colonoscopy at the other end could help rule out Crohns and Ulcerative colitis. (or do it another time)

 

https://www.celiac.com/forums/topic/2687-ulcerative-colitis-vs-gluten-sensitivity/

 

You are young and need to find out what you have so that you can move forward and age heatlhyly.

 

I hope you can find a  financial compromise.

 

I got to go eat a sandwich for supper now (for my gluten challenge).

Im only kind of "gorging" on gluten because it doesnt fill me up.

 

You think i need to wait longer than 5 weeks?? I know this is my last shot so I want to make sure to give it long enough.

 

How long are you doing the gluten challenge?

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

I was gluten free for 2 years.

I restarted eating bread in November.

I might be scoped in June but I'm trying to find a better gastro doctor,  I didn't like the one I met.

 

 

................................................................................................................................................

To answer your question:

 

What I read was that you have to be eating  4 slices of bread per day for 12 weeks.

 

..................................................................................................................................................................

source:  Open Original Shared Link

 

 

A biopsy for celiac disease looks for changes in the small intestine that happen when you eat gluten. If you have stopped eating gluten, your intestine may have begun to heal and that can lead to a false negative result (a negative biopsy even though you have celiac disease).

In general, the recommendation is that you eat the equivalent of 4 slices of wheat bread every day for at least 3 months before a biopsy. Your doctor may have different recommendations for you, based on your own medical condition.

We don't know a lot about how long it takes to redo damage after your gut heals, so this might not be enough time to re-introduce damage.

foam Apprentice
foam
Posted

Better to just do the genetic test and if you have the genes just don't eat gluten, pretty black and white. It's not worth taking the chance if your genetically high risk. My first child is due soon and he wont be seeing any gluten until he's had the test, if he's inherited DQ2 from me he will never see gluten while he's under our care. My wifes of spanish and asian american decent and is tough as nails digestive wise and totally immune to eating grains goes so I'm hoping he gets those genes from her. I'm engilish / irish and it's all bad news for grains for me.

taynichaf Contributor
taynichaf
Posted
  • Author

I was gluten free for 2 years.

I restarted eating bread in November.

I might be scoped in June but I'm trying to find a better gastro doctor,  I didn't like the one I met.

 

 

................................................................................................................................................

To answer your question:

 

What I read was that you have to be eating  4 slices of bread per day for 12 weeks.

 

..................................................................................................................................................................

source:  Open Original Shared Link

 

 

A biopsy for celiac disease looks for changes in the small intestine that happen when you eat gluten. If you have stopped eating gluten, your intestine may have begun to heal and that can lead to a false negative result (a negative biopsy even though you have celiac disease).

In general, the recommendation is that you eat the equivalent of 4 slices of wheat bread every day for at least 3 months before a biopsy. Your doctor may have different recommendations for you, based on your own medical condition.

We don't know a lot about how long it takes to redo damage after your gut heals, so this might not be enough time to re-introduce damage.

2 years!! Thats awesome! But it sucks that you have to do the challenge after such a long period of time...

 

I was only intentionally gluten free for 2 weeks, and light gluten since January.. I don't think i'm willing to wait 12 weeks of feeling like complete crap to finally get a diagnoses.. I feel like i've already wasted much of my high school years, and i'm determined to have a good summer before im off to college. I'm going to call and push back my appointment a week or two, but i dont think i can push it back any longer! thanks though <3

taynichaf Contributor
taynichaf
Posted
  • Author

Better to just do the genetic test and if you have the genes just don't eat gluten, pretty black and white. It's not worth taking the chance if your genetically high risk. My first child is due soon and he wont be seeing any gluten until he's had the test, if he's inherited DQ2 from me he will never see gluten while he's under our care. My wifes of spanish and asian american decent and is tough as nails digestive wise and totally immune to eating grains goes so I'm hoping he gets those genes from her. I'm engilish / irish and it's all bad news for grains for me.

I was going to get the genetic test done, but i've been told even that is not all that accurate because there are different genes besides the 2 usual celiac ones... if that makes sense. I'm also just going for the endoscopy because i would rather have a diagnoses.

 

thank you very muchhh <3

Sassbo Newbie
Sassbo
Posted

I was tested in February and came back negative, but had already eliminated gluten so not sure what the point of it really was.  I guess I really don't care at this point.  The thought of eating gluten and feeling horrible to get a more accurate test result doesn't seem worth it.  So right now I am just not eating gluten.  Eat gluten = feel bad.  No gluten = feel good.  At some point I may change my mind.....

taynichaf Contributor
taynichaf
Posted
  • Author

Guys... My mom is really against me getting the endoscopy due to money... This is just making everything worse! Ughhh... I just feel like crying.

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